Steven's Story

by Gina
(WV)

My son was misdiagnosed for more than 10 years. He has had stomach pains, chronic constipation, not able to gain weight, nauseaded every day (just different levels of nausea every day). He was put on miralax daily for 3 years, stool softeners, and acid reducers. The doctors said I wasn't feeding Steven and that is why he wasn't growing or gaining weight. Another doctor said he was depressed causing the problems and put him on antidepressants. Another doctor said it was his gallbladder failing and the summer between 8th and 9th grade he had his gallbladder removed.

After all of this he still stayed sick all the time and still had trouble going to the bathroom. His stool had become cream colored and then his family doctor said his liver wasn't working properly and sent him to another specialist. After all the doctors he'd already been to I really didn't think we'd get any answers that was different from the other specialists he had seen.

This doctor said it was all in his head, but wanted to do more testing to verify. They done the endocopy and looked at this stomach and took a few biopsies. The doctor even said he saw several things that he was unsure of (but celiac was not one of them). When we went back to the doctor for the biopsy results the doctor was reading them aloud...then he stopped. He had me come closer to the computer. To his shock Steven's biopsy had came back with the diagnosis of Celiac Disease.

Steven still did not receive the CD diagnosis until labs were also completed. Once the lab results on his blood work were back, then he received his diagnosis and what we thought was one of the worst things that could have happened to him turned into such a blessing.

The diagnosis has changed his life in a good way. He is able to complete a full week of school. (which he had not done in years) He is off most of the medication the other specialists said he couldn't function without. He is growing taller, he has gotten his driver's license, he now has a girl friend, and loves to go out to different places with his friends. He is like every other 16 year old.

To think, all of this because of a food product....Gluten.

Steve's response: Gina thank you for sharing this story with us. Your son's mis diagnosis is very similar to my son's. Our doctor put my son on a "bland" diet because he thought he had acid reflux! SO what did we feed him? Plain pasta loaded with gluten! Thank god he was finally diagnosed with celiac because he too is 16 and is nearly 6ft 180 lbs and very healthy since being 100% gluten free!